- Posted June 28, 2014 by
Greensboro, North Carolina
This iReport is part of an assignment:
Raising a special needs child
Ellie is not Disabled, She is Differently-Abled
Ellie Gromko came into our world on June 26, 1996. She appeared to be a perfectly “typical” child. In the first year we noticed she wasn’t hitting milestones. Then something tragic happened in her first year, her older sister Caitlin (7 years old) died post tonsils and adenoids surgery when she was 9 months old. Our family, including myself, went into to a stage of grief which caused us to “miss” Ellie not hitting developmental milestones and regressing somewhat. A year later, when the fog of grief lifted a bit, we realized something was very wrong. First the doctors said, “Kim, you are displacing your grief for losing Caitlin by seeing things with Ellie that are not there”. This was infuriating and insulting to a parent. None of us were imagining how far behind she was. She was far behind. She didn’t speak. She was very aggressive. She lacked gross motor skills that other almost 2 year olds had. And, her fine motor was not even remotely close to that of a typically developing almost 2 year old. Back in 1999, no one wanted to use the label Autism. I look back at some of the old medical reports and they tip-toed around that diagnosis. Eventually, around 3-4 years of age, Ellie was diagnosed with Autism.
Back then, it was so difficult to find anything on Autism. What little I could find on the internet referred to children with Autism coming from “refrigerator Mom’s”. I knew that wasn’t me. I was oozing with love for my children and knew this couldn’t be correct. My desire for information, my desire to help Ellie, my desire to do everything I could to help her reach her potential kicked in…….and the rest is history.
Learning’s from Ellie
Our entire family changed because of Ellie. Why? Raising a child with special needs is so different than raising typical children. I know because I have both. Ellie has an older brother names Thomas. Ellie and Thomas couldn’t be any more different. Ellie has an IQ of 40 with an adaptive IQ of 60. Thomas is gifted, graduated valedictorian of his high school and is a Parks Scholar with a full academic scholarship at North Carolina State University. To say the least, they were very different growing up. The difference between the two children was as wide as an ocean. I was determined from the beginning, that despite their differences, they were going to be a big part of each other’s lives.
Before I share what we learned from raising a child with special needs, I need to share a little more history. About 3 years after Ellie was diagnosed with Autism, we started to see Ellie have what appeared to be mini-seizures. After many tests from some fine medical institutions in Boston, Ellie was diagnosed with her 2nd diagnosis – Landau Kleffners Syndrome Variant which manifests itself in epileptic aphasia. Sigh…..that diagnosis was a tough one to swallow. Now came the onslaught of anti-convulsants and finding the right “cocktail of medicine” to stop the seizure activity. Keep in mind, Ellie did not come with a manual so this was all “figuring out as we go along”.
A few years after the Landau-Kleffners diagnosis, we started seeing some strange bruising. It was like someone took a pencil and poked Ellie. And, there were bruises in strange places – like her ear lobes. Then came that frightful day in August of 2005 when Ellie had a subgaleal bleed on her head. Never have I seen a child’s face fill up with so much blood under the skin. It was frightening. After 2 emergency room visits, an admission to a local hospital, she was transported via ambulance to NC Children’s Hospital. She was diagnosed a few days later with a Vitamin K deficiency. How did this happen? One of her epilepsy medications did something to her liver that prevented it from producing Vitamin K naturally. Ellie had to undergo a radical change in anti-convulsant mediation and now had to take medication to make sure that her platelets behaved like they were supposed to so that her blood would clot.
Three diagnoses – we call it the Trifecta. However, we were not going to let the three diagnoses deter her from living a full life. And, we were not going to let her three diagnoses consume our lives either. For the 9 years post her last diagnosis, we gained the following learning’s on life and love that we would have never learned without Ellie. Those learning’s make us a happy family despite the physical, emotional and financial demands of raising a child with special needs.
1. Determination. Ellie made us realize that there is nothing you can’t do if you set your mind to it. They told me that Ellie was never going to do so many things from reading to toileting. Today, she reads at a 3-5th grade level and she is such a teenager in the bathroom. Mind you, she needs some prompting to remember to wash correctly but she amazes me with her determination to try to be independent. Her brother was very inspired by her determination and long before becoming a valedictorian or Parks Scholar said, “I am blessed to be able to do all that I can do Mom. If Ellie gets up every morning and tries as hard as she does on the most basic of activities that we all take for granted, then I always need to try my hardest.”
2. Love. Ellie is motivated by love and pleasing others. Who would have ever thought that a child with autism who lacked social interaction would be so motivated by love? We have habilitation technicians (like nurse’s aides) who work with her but they focus on habilitative as well as personal care and Ellie looks as these women as “friends who guide her”. That friend component is so important to her. Ellie has taught us that love conquers all. We are convinced that our love (and the love of family and habilitation technicians) broke through her autism barrier. When she takes her hand and gently rubs it down my face, she says she loves me more beautifully than any spoken word.
3. Sibling Synergy. Ellie and her brother Tom are 11 ½ months apart. With them being so close in age, it had its pros and cons. But the amazing part of this Sibling Synergy is how it helped each child to grow into what they are today. They have a bond that I am jealous of. When Ellie was a baby, she rarely spoke and didn’t cry much. When Ellie would wake from a nap upstairs in her crib, Tom would come to me (downstairs) and say, “Ellie wake”. There was this ‘twin bond’ that kept them connected then and now. He went on to be her Special Olympics Coach. He founded a partnership in his high school district to encourage service learning with people with disabilities. He has told us many times that some day we will be too old to care for her so he needs to find a wife someday who loves people with disabilities as much as he does because Ellie will always be a part of his life.
4. Hard Work Pays Off. Ellie being in our life has made us realize that hard work pays off. The harder you try - the more benefits you reap. She is a living testimony that hard work results in progress. She inspired her Mom, Dad and brother with a great work ethic. I guess you could say she is our inspiration for many things.
5. It’s the Little Things. Ellie notices a bird chirping. Ellie notices a beautiful flower. Ellie gets joy out of life’s simpler things. With her in our lives, we have stopped and noticed the little things more and it has made our life fuller.
6. Laugh Hard, Laugh Often. Ellie has a smile that is contagious and way of making people laugh with her silly faces and antics. It is funny that our family and our habilitation technicians use phrases that Ellie says in their regular life because they are so sassy and funny. Ellie has a collection of whoopie cushions and tricks up her sleeve to get a laugh out of all of us. Laughter is the best medicine and we have lots of that in our house.
Milestones and Challenges
Wow! Ellie has made lots of progress. Some special education teachers have been amazed by her progress. We attribute her progress to her determination, the love and support of her family, a great team of habilitation technicians, wonderful teacher and teacher aides, the love of her brother and best friend, desire to work hard to gain more independence. Today she can speak in phrases. She usually, not always, has to be prompted. She learned out to use an augmentative communication device which opened up more of the world to her. She continues to improve her reading skills and we’ve have set a goal for her to get to 6th grade reading level before she finishes high school at 21 years old. She now volunteers at the farm where she trains for Equestrian Special Olympics. Ellie participates in a special needs dance class and a special needs swim class. She goes to special needs dances and she bowls with her special needs friends. Sometimes we get jealous of her social calendar cause it is better than ours!
Challenges throughout the years have been more external than internal. People say the most horrible things in front of her and to her family. People ask “when are we putting her in a home”. Well, we don’t see her as burden so why do you ask? She is an active member of our home – she helps out, does chores and of course is a great source of joy. People have used the “R” word to describe her. The “R” word is so hateful and in 2014 we can’t believe people still use it. People define her by the noises she makes (she perseverates/stims on noises when nervous). I don’t define people by their bad hair dye job, or their shirt that is too tight, why would you define her by the noises she makes. People have commented that her autistic aggressive behaviors are because we don’t spank her enough. Seriously people, I am pretty sure you can’t beat the autism out of her! I shake my head every time I hear that one. About 8 years ago, I had an employer tell me that I am not promotable because I had a child with special needs so they couldn’t rely on me 100% because they never knew when she would get sick and end up in the hospital. It is 2014 and with our aging population, it is time to put those pre-conceived notions in the past and look to the future. My son had faced ridicule in school because his sister is different. He never got bitter about the ridicule. It just made him stronger. He has two wonderful responses to the ridicule. The first one is – she is not disabled, she is differently-abled. The second is- she can take medicine and get better, but the way you are behaving is ugly and there isn’t any medicine for ugly.
We have a saying in our home. When our oldest daughter died suddenly 17 years ago, we got a handful named Ellie Gromko to distract us from our grief. When you lose a child, there feels like there is a whole inside of you the size of the Grand Canyon. You don’t know how you are going to move on from that loss. Raising a disabled child, has required so much love that it helped us to heal. Yes, we experience some chronic sorrow now and then as we realize that Ellie can’t reach typical milestones like typical children do, however we also experience the joy of helping her define new milestones and reaching those.
Some say that a family suffers when raising a child with a disability because it is harder, this family learned so much and is more successful because of her. Our son always tells us that he would not be where he is today without his “sister inspiration”.